As the weeks pass…life without methotrexate

June 5, 2016

As I mentioned in my last post, I had to go off the methotrexate. Rid my body of it and I’ve read different thoughts online around whether you should be off it for a month, or three months or six months before trying for a baby. In the end I went on my rheumatologist’s recommendation and suggest you do the same.

The first six or seven weeks…I felt good. I felt GREAT. No additional pain, I wasn’t feeling any malaise, nausea, headaches that I had grown accustomed to, and when we were on our honeymoon, I discovered I wasn’t nearly as sensitive to sunlight. This was fantastic.

I was starting to question why I was on that drug at all and maybe I didn’t even need it.

But then on the eighth week my shoulders started to hurt again. Sleeping got uncomfortable, I’d wake when I needed to turn because of the pain. I found it hard to lift my arms up to get dressed, do my hair, reach things on a high shelf.

My wrists also started to ache again and I got a pain at the base of my neck. This was all too familiar – well the shoulders and wrists were. It reminded me of back in 2009 when this dreaded disease took hold of my body.

I’d discussed going back on the prednisolone if the pain got too bad off the methotrexate but I emailed my rheumatologist (yeah he’s really good like that) and he told me to try going back on the Orudis (anti-inflammatory) first. Which of course means also going back on the nexium (to protect my stomach). And just like that, I’m taking a handful of drugs again and my pharmacy bill has jumped.

It’s helping. I’m not feeling amazing, but it’s not unbearable at this point. I just have to keep my eye on the prize… if we want to have kids, I need to do this.

Sorry to those who read this and aren’t sick as I know the med talk is a bit boring but I also know for those researching the illness as they are battling it too – it’s helpful to know what meds others are using.

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4 Responses to “As the weeks pass…life without methotrexate”

  1. colin brehaut said

    You keep posting, if it wasn’t for you posting about attempts at getting off the drugs, about future hopes etc, others may give up. You keep posting xx

  2. Maura McKenna-Rossow said

    I wonder at what point in the shoulder and wrist pain does one say I have had it trying it without meds. I am in pain in wrist and shoulder and my foot sometimes drags . I am 50 50 on whether to try methotrexate ( i am past having kids-have 1 healthy daughter). I am afraid of meds. But I hate being a person half alive.

    • Hi Maura,
      Are you not on any meds at all?

      It has to be a personal choice what you take and if you take anything but your doctor should help you weigh up if it’s more damaging to your body to be on nothing.

      For me, when I first got sick there was no question, I needed medication fast. My quality of life had gotten so bad because if the pain.

      While I’d prefer to be on nothing, I’d also prefer to not be sick but that’s not the reality. The medication helps me live a pretty normal life. One that is not dominated by this disease.

      If the pain is impacting your day to day life, it might be worth discussing your options with your doctor.

      Good luck
      Naomi

  3. jodiebodie said

    It’s so interesting to read about your experience. I agree with colin brehaut above – keep posting!

    It is very helpful to know how others with MCTD are managing the meds issue; such a balance between managing symptoms and still feeling human and not one big collection of side fx. I appreciate your details about the symptoms – difficulty raising your arms was interesting because I have that same problem…it doesn’t make sense that I can wheel my manual wheelchair for an hour at the shops and yet my arms can’t tolerate anything above the shoulders for very long like hanging out washing on the line or picking products off the supermarket shelves. Your post is sort of reassuring to know that my symptoms match others with MCTD, that it must be an MCTD thing and I am not just going mad or imagining it.

    I am on prednisolone – my body cannot tolerate NSAIDS – and it has improved my quality of life by reducing fatigue while I have other meds for pain relief. Together, they work for me. However I still experience the symptoms you describe like joint aches and pains, but they are at a level where I can still function fairly well on most days.

    Methotrexate was in the news today and I thought it might interest you. It is a warning that we need to be very careful with our dosages and keep good communication with our medical teams.

    http://www.abc.net.au/news/2016-06-06/methotrexate-linked-to-eight-deaths-since-2000-research-says/7479566

    Good luck with your campaign to live MTX free (even if temporarily) and start your family.

    I hope your symptoms do not revert to the levels of disability you had before.
    Take care

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